Getting the word out

Diagnosed with prostate cancer eight years ago when he was 65, Raymond Fuller had no family history of the malignancy, but he’s afraid he might have started something.

After all, a disease that can be inherited has to start with some generation and Fuller is concerned that he might have passed a genetic legacy for prostate cancer on to his 27-year-old son.

Of course, his son has already inherited one other thing from his father that alone would make him a high risk for prostate cancer — being African-American.

Not only are African-American men approximately 125 percent more likely than Caucasians to develop prostate cancer, they are also 150 percent more likely to die, especially young men in their 40s, because of a more aggressive form of the malignancy.

Consequently, Fuller wants to make sure that his son knows “all about getting a regular physical done that includes a comprehensive PSA test and a digital exam,” two tests he credits with finding his cancer early on.

That may be easier said than done because the majority of primary care doctors have stopped using the Prostate-specific antigen (PSA) blood test as a screening for the detection of prostate cancer.

About five years ago, the United States Preventative Services Task Force asserted that there was no benefit to the screening test for healthy men and that there was harm from it: a barrage of follow-up testing and possibly unwarranted surgery for men whose cancer would grow slowly and never be life-threatening.

The task force did suggest that patients have a conversation with their physicians about the test; however, many primary care doctors stopped making the PSA blood test part of annual check-ups for any man and, with time constraints on appointments — 15 to 20 minutes — they also skipped the conversational part.

“It was very well-intentioned,” said Dr. Mitchell Sokoloff, speaking of the USPSTF recommendation. “The goal was to stop screening older white men with little risk of having significant disease and probably couldn’t benefit from treatment.

“Unfortunately, now the 45-year-old African-American man with a strong family history is no longer getting screened,” said Dr. Sokoloff, who is chairman of the Department of Urology at both the University of Massachusetts Medical School and UMass Memorial Medical Center.

As for the argument about unnecessary treatment, Dr. Sokoloff said that was true in the past, but there are now “several methods that have been developed to help differentiate aggressive cancers from indolent ones."

“In the past 10 to 15 years, the ability to differentiate what cancers need treatment from those that do not has dramatically changed the management of prostate cancer for the better for patients and for physicians,” he explained.

After working elsewhere with populations at high risk for prostate cancer, Dr. Sokoloff found the same vulnerable population here: African-American men and African men who have immigrated to Central Massachusetts from the western and central part of that continent. In fact, currently, Worcester County has the highest rate of prostate cancer in black men in the state. They are men who Dr. Sokoloff describes as having “really, really horrible prostate disease.”

In making the decision not to recommend PSA testing, the USPSTF relied on two studies, one European, the other American. The European study did not include anyone of African descent while the U.S. study involved only 4 percent of African-Americans, according to Thomas A. Farrington president and founder of the Prostate Health Education Network.

“That is not a significant statistical number,” said Farrington, who, himself an African-American, was diagnosed with prostate cancer by a PSA test 16 years ago at age 55.

Three years after that, he founded PHEN, an organization dedicated to eliminating the African-American prostate cancer disparity — the largest racial disparity for any type of major cancer — through various initiatives.

On the state level, PHEN sponsors two monthly support groups, one at the Dana-Farber Cancer Institute in Boston and one in Worcester at the UMass Memorial Ambulatory Cancer Center Building, 55 North Lake Ave.

In addition to support, those attending the meetings, like Raymond Fuller, also receive more medical education about prostate cancer, information they can use when reaching out to other African-American men to tell them about the dangers of prostate cancer.

On a national level, PHEN and other similar groups across the country hold a two-day annual “African American Prostate Cancer Disparity Summit” in Washington, D.C., in an effort to educate national leaders, including those who might be influential in funding research and treatment.

One new government-financed research project involves the National Cancer Institute, which is now funding a five-year study in Sub-Saharan Africa — the area of Africa that lies south of the Sahara desert. Researchers will be looking for the genetic causes of prostate cancer among African men and evaluating how the population differences and the history of African and African-American populations affect the underlying reasons for high rates of prostate cancer.

Led by the Dana-Farber Cancer Institute, researchers from 11 institutions in the U.S. and Africa will also study the more aggressive form of prostate cancer, in order to find better ways of preventing and treating the disease and, therefore, eliminating the disparity between races.

While there has been a significant decline in deaths of all men from prostate cancer since the federal Food and Drug Agency approved the use of PSA testing back in 1994, the disparity between races remains high, according to Farrington.

Early detection holds the most promise to save the lives of African-American men and men of African descent, according to Dr. William J. Catalona, a prostate cancer surgeon who pioneered the development of PSA testing.

But Dr. Catalona is now seeing in his practice at Northwestern Memorial Hospital, the teaching hospital for Northwestern University’s School of Medicine, an increasing number of men from all racial backgrounds coming in with more advanced stage prostate cancer.

He’s seeing men who have never had PSA testing and men who were followed for some years with PSA testing and then, after the task force made its recommendation in 2012, were not screened any more by their doctors.

“It’s probably going to translate into more deaths,” said Dr. Catalona, who also directs the clinical prostate cancer program at the medical school while serving as the doctor for the U.S. Urological Research Foundation, which focuses on genetic research into prostate cancer.

“I was in practice before we had PSA testing and we used to see so much advanced disease; then most of the patients we saw (after PSA testing was instituted) had early stage disease and were curable.

“Now it’s like going back into time, being in a time machine,” he said. Not only did the task force recommend against PSA testing, it also recommended against annual digital exams that could find lumps that only followup testing could determine whether might be malignant or benign.

“It (the task force) recommended against all prostate cancer screening until you have symptoms,” said Dr. Catalona. “By the time you have symptoms from prostate cancer, it’s usually too far along to cure.”

According to all the prostate cancer experts we talked to, there’s a belief that the USPSTF will take a second look at the PSA test as a screening tool and may reevaluate its usefulness in detecting prostate cancer in certain populations.

Why?

“Because more men are showing up with advanced prostate cancer,” said Dr. Sokoloff, who serves as a medical adviser for PHEN and its support groups.

“Just the thought of it shifting back from localized, early, curative disease … it is very disheartening to see men with advanced prostate cancer, with the pain, the disability, the decreasing longevity.”